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Epilepsy conference slated for Nov. 4

by Heather Woolwine
Public Relations
Epilepsy is a condition often accompanied by fear. A patient’s fear of having a seizure at a dangerous time, like when driving a car. A parent’s fear of losing a child because of increased seizures. A community fear put in place thanks to stereotypes of those who suffer from epilepsy.
 
Part of getting over the fear associated with epilepsy is to understand that it is treatable, and that being diagnosed with epilepsy does not define the person who has it.
 
“Epilepsy is what these patients have, not what they are,” said Kris Topping, R.N., MUSC adult epilepsy coordinator. “They are capable of going out there and being productive members of the community.”
 
November is National Epilepsy Month, and MUSC will hold a statewide conference from 8 a.m. to 4:30 p.m., Friday, Nov. 4 at the North Charleston Sheraton.
 
The conference is focused on educating patients and families about the most up-to-date information on the treatment of epilepsy, but teachers, coaches, clergy, general practitioners, general neurologists, nurses, social workers, and anyone from community are encouraged to attend. Conference topics will include men’s and women’s issues with epilepsy, and pediatric, social, and legal issues with epilepsy. The cost for patients, family members or individuals is $35. Professionals’ cost is $60 and includes a continuing education certificate for seven and half hours. Fees include materials, breaks and lunch. Contact Kelly Cavins, R.N., at 792-3307 for more information or to register.
 
Epilepsy is a neurological condition characterized by abnormal electrical discharges within the brain.
 
Although 2 to 4 percent of people in the United States will experience a seizure in their lifetime, approximately 1 percent has epilepsy (a tendency to have recurring seizures). It affects people of all ages, races, and ethnic backgrounds, with more than 2.7 million people living with epilepsy in the United States alone.
 
Despite what many have seen or heard about an epileptic seizure, they actually manifest in many different ways. Ranging from abnormal movements, loss of consciousness, and staring spells to repeating certain phrases or movements, smelling strange odors, or seeing funky shapes. Epilepsy gives itself away when the same kind of symptom occurs repeatedly, and each episode is exactly the same.
 
From a multidisciplinary approach, epilepsy treatment is three-pronged. Epilepsy medication is the most common form of treatment at this time, but for about 30 percent of all patients with epilepsy, medications alone don’t do the trick. These folks then become candidates for epilepsy surgery.
 
 “Surgery is another chance for seizure freedom,” Topping said. “The first step is to undergo an examination and see if the area of the brain where the seizures are occurring can be pinpointed. It’s a very extensive evaluation, and rightfully so because you don’t want to remove the incorrect area or remove an area that will cause more harm than good for the patient. VNS is a great option, too.”
 
Vagus nerve stimulation (VNS) describes placing an implant in the patient’s chest, similar in size and style to a pacemaker. The implant electrically stimulates the vagus nerve that runs to the brain, thus decreasing the number of seizures, severity of seizures, their length and other effects.
 
Primarily in children, diet can sometimes have an effect on seizures. A ketogenic diet, characterized by a very high fat content, is a very strict and rigorous plan that allows no deviation from its parameters. Some pediatric patients found success with this method, but most physicians will admit it becomes increasingly difficult to follow unless the family is very committed to it.
 
Dr. Paul Pritchard

“Epilepsy is an illness which impacts not only the patient but the family, who often must provide transportation, surveillance to avoid injury to the patient, and other assistance. We must treat the person with epilepsy, not just his or her seizures,” said Paul Pritchard, M.D., MUSC neurologist. “These patients are dealing with multiple concerns; controlling seizures, limiting adverse outcomes concerning education, employment, and social adaptation. But they can and do, live life to the fullest.”
 
“Having this conference is important to continue to improve the quality of life for patients with epilepsy,” said Robert Turner, M.D., MUSC pediatric neurologist. “But providing treatment for epilepsy is still only like putting a band-aid on it. We want to eventually be able to cure it.”
 
Described by Topping as “MUSC’s Patch Adams” when it comes to dealing with children, Turner likened having a child with epilepsy to walking across a stage with trap doors all of the floor that could swing open at any time as you try to walk across. This unpredictability can be terrifying.
 
Dr. Robert Turner

“One of the most difficult things about epilepsy is the initial diagnosis,” Turner said. “An accurate diagnosis is so important. Ultimately, our goal is to make our patients seizure-free with no side effects from treatment. Working with children, that can be a bit more of a challenge because of their ever-changing and developing brains. It really is amazing to watch children and families cope with living with seizures. Although I’d like to see more research put into finding a cure, it really makes me happy to try to help these patients and families who are going through so much.”
 
For additional information on MUSC’s epilepsy programs, visit http://www.musc.edu/neurology/clinical_neuro/epilepsy.htm.
 
For general information on epilepsy, visit http://www.epilepsyfoundation.org/local/socarolina.

12 Common Epilepsy Myths
1   You can swallow your tongue during a seizure. This is physically impossible.
2.  You should force something into the mouth of someone having a seizure. Bad idea, but a good way to chip someone’s teeth, puncture gums, or break someone’s jaw. Instead, roll the person on their side and put something soft under the head.
3.  You should restrain someone having a seizure. You can’t stop it, so let it run its course.
4   Epilepsy is contagious. About as contagious as a gun-shot wound.
5   Only kids get epilepsy. Epilepsy is an equal-opportunity offender.
6.  People with epilepsy are disabled and can’t work. People with epilepsy have a range of intelligence and abilities like anyone else in the world.
7.   People with epilepsy shouldn’t be in jobs of responsibility and stress. People with epilepsy are found in all walks of life and at levels of business, government, etc.
8.   Medication solves the problem. While it can be successfully treated with medication, it doesn’t always work for everyone.
9.  Epilepsy is rare and few people have it. More than 2.7 million Americans live with it daily.
10. You can’t die from epilepsy. Unfortunately, this isn’t true. An estimated 22-42,000 deaths annually are the result of prolonged seizures.
11. You can’t tell what a person will do during a seizure. Seizures take a characteristic form for a particular person, though the seizures may be inappropriate at the time or place, they will be consistent from one episode to the next.
12. People with epilepsy are physically limited to what they can do. In most cases, this is simply not true.

Source: Epilepsy Foundation,
http://www.epilepsyfoundation.org.

 

Friday, Oct. 28, 2005
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